Methods: Medical records, primary caregiver report, and clinical assessment were used to compile detailed case histories and assess current dysphagia and feeding skills.
Results: Both cases demonstrated heterogeneous oral motor and feeding outcomes, including delayed oral motor skills, restricted dietary variety, and difficult mealtime behaviors that contributed to protracted recovery of age-appropriate PO intake. Both children required ongoing diet and/or fluid modification and supplemental non-PO feeding via gastrostomy at the time of review, that is, 2-year post-injury.
Conclusions: Recovery from dysphagia post-alkali ingestion is protracted and complex. Dysphagia, delayed oral motor skills, and difficult mealtime behaviors may persist secondary to ingestion injury and its associated complications. These cases highlight the importance of considering early referral for feeding assessment and intervention to assist children and families with recovery. Progression through safe and effective oral (per os, PO) intake is needed, as well as provision of support for primary caregivers.
- Implications for Rehabilitation
Pediatric chemical ingestion injury can cause long-term dysphagia and long-term feeding difficulties
Initial injury severity does not reliably correlate with eventuating level of aerodigestive impairment.
Clinical and instrumental assessment is required to monitor swallow function to enable commencement of targeted rehabilitation when appropriate.
Early involvement of a feeding therapist is recommended to minimize the long-term effects on oral motor skill development, progression to age-appropriate diet, and provision of family-centered care.
Method: Studies published from 1 January 1990 to 19 July 2016 were identified using Medline, Cinahl, PsycINFO, Web of Science, email requests and cross citations. Studies were reviewed narratively in relation to identified themes.
Results: A total of 35 studies were included in the review. Themes identified were as follows: health conditions associated with dysphagia; mortality; health service use; practice and knowledge in supporting people with intellectual disabilities and dysphagia; intervention effectiveness and quality of life. Dysphagia is associated with respiratory infections and choking and may be under-recognised. Silent aspiration is common and may go unnoticed. Management practices exist, but there are few intervention studies and no randomised controlled trials (RCTs), and hence, the effectiveness of these is currently unclear.
Conclusion: Dysphagia is a key concern in relation to people with intellectual disabilities. There is urgent need for research on the management of dysphagia in people with intellectual disabilities, including mealtime support offered, positioning, dietary modification and impact on wellbeing.
- Implications for Rehabilitation
Dysphagia is common in people with intellectual disabilities, associated with serious health risks and may be under-recognised.
Caregivers of people with intellectual disabilities should be educated about dysphagia.
There is an urgent need for research on improving the management of dysphagia in people with intellectual disabilities.
Improved recognition and management of dysphagia may reduce the occurrence of associated health conditions and reduce hospital admissions and premature death in people with intellectual disabilities.
Methods: From 101 articles initially identified, 14 articles met the study criteria. Eleven papers described the effects of carbonation on swallowing in healthy participants whereas three described the impact of carbonation in dysphagic populations. A narrative synthesis of papers was undertaken given the diversity of identified studies.
Results: Synthesis of findings was challenging given the exploratory phase of most research activity with diverse populations described and extensive differences in research methodologies. There is currently weak, but potentially positive evidence to support using carbonation as a compensatory technique in dysphagia rehabilitation.
Conclusion: Despite future potential, existing evidence fails to provide clear direction for the clinical implementation of carbonation. Validation of carbonation use with the dysphagic population requires further research with consistent, controlled methodologies, and larger cohorts of participants to inform potential for dysphagia rehabilitation.
- Implications for Rehabilitation
The use of carbonated liquids has been proposed as a possible sensory enhancement technique which may facilitate changes to swallow physiology.
However to date, there is limited information to direct clinical implementation.
This paper provides a narrative synthesis of existing knowledge and highlights possible limitations of findings reported.
Research to date has used disparate research methodologies in varied populations making synthesis of current findings challenging.
Method: Published autobiographies narrating the author’s experiences of living with dysphagia following stroke were sourced. Ten autobiographies were retrieved and the texts were manually inspected. All references to eating, drinking and swallowing were extracted and pooled to form the data set. A qualitative approach using a six-step interpretive phenomenological analysis process was taken to analyze this data set.
Results: A wide range of interconnected themes emerged from the data, allowing further synthesis into six overarching super-ordinate themes. These six super-ordinate themes were: “physical consequences of dysphagia”; “process of recovery”; “coping and adjusting”; “changed relationships”; “society” and “control”.
Conclusions: This study highlights the unique contribution of autobiographical accounts in developing our understanding of living with dysphagia following stroke. The findings emphasize the significant emotional and social impact of dysphagia during the stroke recovery process and add further depth to our understanding of the experience of this clinical group.
- Implications for Rehabilitation
Autobiographical accounts often hold valuable first-hand information on patient perspectives and journeys, which when viewed through the eyes of a qualitative researcher, can add depth to our understanding of particular healthcare experiences.
Persons who experience dysphagia as a result of stroke travel a complex rehabilitation journey, involving the interaction of many physical, emotional and social considerations.
Healthcare professionals should be aware of not only the physical, but also the significant psychosocial consequences of living with dysphagia following stroke.
Further research is required in this field, so that the experiences of these persons can be better understood and findings can be used to contribute to high-quality and evidence-based service delivery.
Method: Initially, a pilot study was conducted to investigate the feasibility of ultrasound visual feedback during swallow tasks. The protocol was then replicated using a single-case experimental designed study to investigate therapeutic effect. Swallow, speech, and oromotor functions were measured across multiple baselines using an A-B-A intervention study design.
Results: During intervention, both participants were able to interpret ultrasound tongue images during swallow tasks. Following intervention, positive therapeutic effect was achieved with reduced frequency of aspiration and self-initiated swallow strategies. Generalization of intervention was evidenced by reduced bolus transit duration on videofluoroscopy and improved functional oral intake scores. Speech and oromotor functions remained stable throughout the study demonstrating experimental control.
Conclusions: This study establishes that ultrasound visual feedback is feasible in dysphagia rehabilitation following partial glossectomy. In addition, the predicted therapeutic effect specifically to swallow but not speech or oromotor functions were demonstrated.
- Implications for Rehabilitation
Partial glossectomy results in altered tongue shape, movement, and function which negatively impact on speech and swallowing
There is limited research evidence to support previously used speech pathology interventions (in particular, tongue range of movement exercises) to rehabilitate dysphagia following tongue cancer surgery
The tongue, and hence oral phase of swallowing, can be viewed by placing an ultrasound probe under the chin
Ultrasound scanning of the tongue is not invasive, can be repeated without dosage side effect. It’s also comfortable for the patient and if a portable probe and monitor are used, can be performed within a variety of clinical settings for assessment or therapy
This study shows specific therapeutic benefit following ultrasound visual feedback along with a motor learning approach to rehabilitate swallow function following partial glossectomy
Visual and verbal feedback that focus specifically on the motor movements undergoing adaptation (e.g., tongue wave movement, tongue elevation, bolus clearance) following partial glossectomy are recommended
Patients who are able to see the ultrasound monitor, hear the feedback given, are cognitively able to self-evaluate tongue movement, and remember intervention goals will most benefit from ultrasound tongue visual feedback in therapy
Clinicians also benefit from visualizing the tongue with ultrasound during assessment and therapy as a direct view reduces the subjectivity of rating task performance
Design: We conducted focus groups (FGs) with 17 GPs.
Setting: Norwegian primary health care.
Subjects: 17 GPs who attended a 5 d course on leadership in primary health care.
Results: Our study suggests that the GPs experience a need for more preparation and formal training for the leadership role, and that they experienced tensions between the clinical and leadership role. GPs recognized the need to take on leadership roles in primary care, but their lack of leadership training and credentials, and the way in which their practices were organized and financed were barriers towards their involvement.
Conclusions: GPs experience tensions between the clinical and leadership role and note a lack of leadership training and awareness. There is a need for a more structured educational and career path for GPs, in which doctors are offered training and preparation in advance.
- KEY POINTS
Little is known about doctors’ experiences and views about leadership in general practice and primary health care. Our study suggests that:
There is a lack of preparation and formal training for the leadership role.
GPs experience tensions between the clinical and leadership role.
GPs recognize leadership challenges at a system level and that doctors should take on leadership roles in primary health care.
Method: The paper uses vignettes to illustrate attention in patient-practitioner interaction.
Results: Attention is a precursor to understanding the patient as a unique individual and the problems the patient brings to the therapy experience.
Conclusions: The capacity of practitioners to attend to their patients has an impact on patient satisfaction and recovery.
- Implications for Rehabilitation
Attention is the precursor to establishing positive therapeutic alliances with patients.
It is essential to attend to the patient as a person with unique experiences, perspectives, and attitudes and to modify treatment based on the person’s priorities and desires.
Practitioners need to develop the interaction skills necessary to understand their patients as unique individuals.
Method: Twenty-two participants including 16 rehabilitation clinicians and 6 persons living with a disability participated in four nominal group sessions. Participants were questioned on current or potential rehabilitation strategies carried out to enhance participation in shopping malls for persons living with a disability. Discussions were audio-recorded and qualitative content analysis was conducted.
Results: Participants mentioned strategies that were either carried out by the clinician, or in collaboration with other parties. The latter type of strategies was either carried out with the collaboration of the client, the interdisciplinary team, the relatives, or community organizations.
Conclusions: Rehabilitation clinicians have a role to play in preparing persons living with a disability to resume activities in a shopping mall. Additionally, therapeutic interventions in community settings may enhance the participation of rehabilitation clients in their everyday activities.
- Implications for rehabilitation
Many strategies are currently used in rehabilitation to prepare persons living with a disability to resume shopping activities.
Clinicians could implement shopping-oriented rehabilitation strategies with the client and/or with other rehabilitation partners.
Involving clients in activities related to shopping might enhance their participation in shopping malls after rehabilitation.
Rehabilitation clinicians can be facilitators for people living with a disability to reach optimal participation.
Methods: Four major databases (PubMed, CINAHL, Cochrane Library and PsycINFO) were systematically searched from inception to September 2016 for qualitative studies that reported findings on the impact of primary brain tumor on social networks during adulthood. Twenty-one eligible studies were identified and appraised according to the Consolidated Criteria for Reporting Qualitative Research. Key findings of these studies were integrated to form superordinate themes.
Results: The metasynthesis revealed the core themes of: 1) Life disrupted; 2) Navigating the new reality of life; and 3) Social survivorship versus separation.
Conclusions: Multiple changes typically occur across the social trajectory of brain tumor, including a loss of pre-illness networks and the emergence of new ones. Understanding the barriers and facilitators for maintaining social connection may guide interventions for strengthening social networks and enhancing well-being in the context of brain tumor.
- Implications for rehabilitation
Social networks and roles are disrupted throughout the entire trajectory of living with brain tumor
Physical, cognitive and psychological factors represent barriers to social integration
Barriers to social integration may be addressed by supportive care interventions
Compensatory strategies, adjusting goals and expectations, educating friends and family and accepting support from others facilitate social reintegration throughout the trajectory of living with brain tumor
Method: An uncontrolled pre- and post-assessment design was employed to study the use of unmodified, low-cost, off-the-shelf smartphones combined with Internet-calendars as a compensatory memory strategy in community-dwelling patients with traumatic brain injury. Thirteen participants received a 6-week group-based intervention with pre-, post- and 2-month follow-up-assessments by questionnaires and by daily assessment of target behaviors for 2-week periods.
Results: Participants reported significantly fewer retro- and prospective memory problems on questionnaires after the intervention and at follow-up with large effect sizes. The performance of target behaviors, however, improved insignificantly with moderate effect sizes. There were no changes in quality of life or symptoms of emotional distress.
Conclusions: This study adds to a growing body of evidence that smartphones are a useful compensatory aid in rehabilitation of prospective memory that should routinely be considered in rehabilitation of traumatic brain injury patients.
- Implication for rehabilitation
Smartphones are easy-to-use and accessible assistive technology for compensatory memory rehabilitation to most traumatic brain injury patients.
By using low-cost, off-the-shelf devices, the technology becomes available to a broader range of patients.
By combining smartphones with Internet-based and cross-platform services (e.g., calendars, contacts) the participants are less device-dependent and less vulnerable to data loss.
Smartphones should routinely be considered as compensatory aid in rehabilitation of prospective memory of traumatic brain injured patients.
Method: Meta-ethnography was used to inform the review, and 21 studies were included.
Findings: The analysis identified a core theme of “engaging in care: struggling through”, as carers, who wanted to be involved in caring, learnt to live with the intense and stressful impact of caring and changes to their life. The core theme is represented through three themes (1) Helping another to live, (2) Adapting ways of living and (3) Negotiating the unknown.
Conclusions: The discussion identified a focus on carers of people suffering from a hip fracture, the willingness of informal carers to engage in caring and the intense experience of adapting to changes in relationships and dependency alongside a steep experiential learning curve. Tensions exist in negotiations with complex health care systems as carers do not feel their expertise is valued and struggle to find and understand information.
- Implications for Rehabilitation
Including relatives/carers in the umbrella of care within a family-centred approach.
Involving relatives/carers within shared decision-making about care requirements and rehabilitation goals.
Utilizing forms of experiential learning to help the development of relatives/carers skills in relation to their role as carer.
Providing opportunities for carers to explore ways of sustaining their own health through self-compassion.
Methods: In keeping with explorative studies, the study utilized a qualitative design in the form of eight case studies. Case study participants were sampled purposively and data were collected through semi-structured interviews. Data were analyzed according to the principles of interpretative phenomenological analysis.
Results: Five themes evolved from the findings. These were no identification with disability, individual approach to disability, the role of personal factors, the role of Christianity as well as attitudes, and support of significant others.
Conclusion: Findings showed that there is a need to bridge the divide between rhetoric and reality for these participants whose stories might resonate with those of many other South Africans.
- Implications for rehabilitation
South Africa is seen as a country that has an inclusive approach to disability and approach disability from a human rights angle.
The article shows that some South Africans are excluded from the dialog on disability, human rights, access, and health care.
Their health and community integration outcomes are left to crippling beliefs about disability, chance and personal attributes.
The academic and political rhetoric does not describe the situation of study participants, and by assuming all South Africans are included, it further marginalizes them.
Method: Two independent expert teams analyzed medical records on 299 consecutive patients admitted for CSS or DSS rehabilitation. One team provided a golden standard for the patient referrals, and the other team provided RCS-E scores. Models for predicting referrals from RCS-E scores were developed on data for 149 patients and tested on the remaining 150 patients.
Results: The optimal RCS-E sum score threshold for referral prediction was 11, predicting the golden standard for patient referral with sensitivity 88%, specificity 78% and correct classification rate 81%. Improved referral prediction performance was achieved by using RCS-E item-wise score thresholds (sensitivity 81%, specificity 89%, correct classification rate 87%). The RCS-E sum score range for patients referred CSS and DSS by the item-wise model was, respectively, 0–12 and 2–22 suggesting strong non-linear interaction of the RCS-E items.
Conclusions: We found excellent referral decision support in the RCS-E and the item specific threshold model, when patients with acquired brain injury are to be referred to CSS or DSS as their primary rehabilitation.
- Implications for Rehabilitation
Efficient rehabilitation after acquired brain injury requires rehabilitation settings that meet patient needs.
Validated tools for referral decision support make the process more transparent.
Patient rehabilitation complexity can be stratified by the RCS-E with high sensitivity, specificity and predictive value of positive test.
RCS-E is an excellent tool for referral decision support.
Method: One hundred and sixty-six subjects with mild to moderate stroke were recruited and interviewed using the PS-SES. The principal axis factoring analysis was run to examine the factor structure, and internal consistency was assessed by computing Cronbach’s alpha coefficient.
Results: The final measure is a 35-item scale with six subscales: (1) managing home participation, (2) staying organized, (3) planning and managing community participation, (4) managing work/productivity, (5) managing communication, and (6) advocating for resources. The instrument demonstrated high internal consistency.
Conclusion: The PS-SES is a reliable measure offering unique information regarding self-efficacy in managing participation.
- Implications for Rehabilitation
Post-stroke participation requires complex management of resources, information, and strategies.
There is a gap in instruments that can assess self-efficacy in managing participation following a stroke.
The PS-SES is a valid tool measuring self-efficacy in using participation strategies in home, work, and community contexts.
Method: Twenty obese male patients underwent a rehabilitation program including adapted physical activity and respiratory physiotherapy. Patients were randomly assigned to a Specific Motor Control Exercise Group (SG) and a Control Group (CG). SG followed a protocol according to the SMARTERehab concept aimed at improving posture, intra-abdominal pressure, rib cage mobility, and perception of correct muscle activation. CG performed an exercise training protocol to improve aerobic capacity and muscle strength.
Result: After intervention, both groups showed similar changes in body weight, fat, and fat-free mass. Respiratory function indexes improved in SG due to improved proprioception and coordination of the deep lumbar-pelvic muscles.
Conclusion: Our study provides preliminary evidence that breathing, postural control, and spinal stability are intertwined. Positive respiratory effects in obese men can be obtained by prescribing specific motor control exercises of the lumbar-pelvic muscles.
- Implications for rehabilitation
Obese subjects present with decreased pulmonary function and postural changes.
Poor coordination of the lumbar-pelvic muscles affects posture and the synergic activation of the respiratory muscles.
Specific motor control exercises of the lumbar-pelvic musculature can improve respiratory function.
Breathing and postural control are intertwined: positive respiratory effects can be obtained by enhancing motor control of the lumbar-pelvic muscles.
Methods: Seven families of children diagnosed with OI type 1 for longer than four years participated. An in-depth semistructured interview with open-ended questions was used to separately collect each participant’s (mother, father, patient and sibling) subjective report of their experience. Interviews were audiotaped and a qualitative discourse analysis was performed.
Results: Pain and fractures, hospitalization, home recovery, back to school and time of diagnosis emerged as the most challenging situations. Time of diagnosis was only mentioned by parents. Some commonalities but also relevant differences in the subjective experience of the same situations, depending on the family role, were found.
Conclusions: Our results reinforce the assumption that OI is a family matter and point to the importance of providing comprehensive and family-centered health and educational services tailored to each family member and to the different situations faced by these families.
- Implications for rehabilitation
Osteogenesis imperfecta is a chronic rare disease that impacts severely the patient’s life and the life of all family members.
The most distressing situations are related to fractures and pain, hospitalization, recovery from fractures while being at home and preparing for school reentry.
All family members participate in the rehabilitation process, each one accomplishing different tasks.
Rehabilitation should include educational and psychological intervention to enhance family strengths and support all family members.
Tailored and effective communication from health providers may play a critical role in the rehabilitation process.
Materials and methods: Eleven adolescents and adults were interviewed using Talking Mats and interview data was analyzed qualitatively with systematic text condensation.
Results: The use of remote communication varies between the participants. The participants also value remote communication differently. Having the possibility to choose between different means of remote communication is important. Being able to determine whether to communicate independently or with support from another person is also valued as relevant. Strategies used to manage remote communication include facilitating for the communication partner and preparing for future communication situations. Those who are able to use writing as an alternative to problematic spoken remote communication like phone calls, for example by using chat or text messaging. Decisions regarding means of communication and human support relate to the concept of self-determination.
Conclusion: Better access to remote communication trough assistive technology such as speech synthesis and picture symbols would make remote communication easier and facilitate participation for people with communicative and cognitive disabilities.
- Implications for rehabilitation
People with communicative and cognitive disabilities face challenges with access to remote communication.
Access to communication technology including remote communication is important for self-determination, for personal safety and for overall participation in society.
Communication technology should be considered in the rehabilitation process and training is crucial.
To understand the possible benefits of remote communication, people with communicative and cognitive disability need to get the possibility to practice.
Professionals play a key role in the assessment and intervention of remote communication for their patients.
Design: Secondary analysis of cross-sectional data from the 2014 Commonwealth Fund International Health Policy Survey of Older Adults.
Setting: 11 western countries.
Subjects: Community-dwelling adults, aged 55 or older.
Main outcome measure: Assessment of goals and priorities.
Results: The final sample size consisted of 17,222 respondents, 54% of whom reported an assessment of their goals and priorities (AGP) by healthcare professionals. In logistic regression model 1, which was used to analyse the entire population, the determinants found to have moderate to large effects on the likelihood of AGP were information exchange on stress, diet or exercise, or both. Country (living in Sweden) and continuity of care (no regular professional or organisation) had moderate to large negative effects on the likelihood of AGP. In model 2, which focussed on respondents who experienced continuity of care, country and information exchange on stress and lifestyle were the main determinants of AGP, with comparable odds ratios to model 1. Furthermore, a professional asking questions also increased the likelihood of AGP.
Conclusions: Continuity of care and information exchange is associated with a higher probability of AGP, while people living in Sweden are less likely to experience these assessments. Further study is required to determine whether increasing information exchange and professionals asking more questions may improve goal setting with older patients.
- Key points
A patient goal-oriented approach can be beneficial for older patients with chronic conditions or multimorbidity; however, discussing goals with these patients is not a common practice.
The likelihood of discussing goals varies by country, occurring most commonly in the USA, and least often in Sweden.
Country-level differences in continuity of care and questions asked by a regularly visited professional affect the goal discussion probability.
Patient characteristics, including age, have less impact than expected on the likelihood of sharing goals.
Design: A prospective, multicenter inception cohort of 133 adult patients in the Paris area (France) who had received a severe traumatic brain injury were followed up postinjury at one and four years. Sociodemographic data, factors related to injury severity and one-year functional and cognitive outcomes were prospectively collected.
Methods: The main outcome measure was employment status. Potential predictors of employment status were assessed by univariate and multivariate analysis.
Results: At the four-year follow-up, 38% of patients were in paid employment. The following factors were independent predictors of unemployment: being unemployed or studying before traumatic brain injury, traumatic brain injury severity (i.e., a lower Glasgow Coma Scale score upon admission and a longer stay in intensive care) and a lower one-year Glasgow Outcome Scale–Extended score.
Conclusion: This study confirmed the low rate of long-term employment amongst patients after a severe traumatic brain injury. The results illustrated the multiple determinants of employment outcome and suggested that students who had received a traumatic brain injury were particularly likely to be unemployed, thus we propose that they may require specific support to help them find work.
- Implications for rehabilitation
Traumatic brain injury is a leading cause of persistent disablity and can associate cognitive, emotional, physical and sensory impairments, which often result in quality-of-life reduction and job loss.
Predictors of post-traumatic brain injury unemployment and job loss remains unclear in the particular population of severe traumatic brain injury patients.
The present study highlights the post-traumatic brain injury student population require a close follow-up and vocational rehabilitation.
The study suggests that return to work post-severe traumatic brain injury is frequently unstable and workers often experience difficulties that caregivers have to consider.